Saturday, 28 February 2015

Crohn's Disease - DIARY - Starting 2015 Take 2

...and for my next appointments - Endoscopy Suite, Haematology then Endoscopy Suite again. I really could do with a gap year from Crohn's. This was going to be one of my shorter posts but as I use them for jogging my memory before the next appointment it has ended up with a bit more detail than I had originally envisaged.

Just a quick recap. I've had three calprotectin (stool) tests over the last 12 months or so and whilst the first one gave a good result the other two have shown a rising trend suggesting there was inflammation in my gut. My consultant thought it would be prudent to have a colonoscopy as I hadn't had one for just over two years. Just to complicate matters I've been taking Omeprazole which has been shown to give elevated calprotectin levels but I think that's clutching at straws. If it's the Omeprazole then why weren't all the results elevated as I started taking it in 2010?

Recently I've been feeling very well. No abdominal pain. No bathroom dashes. Even the ache around my anastomosis has been far less frequent. When in London I've been walking around 10km a day for exercise. I was curious to know what the colonoscopy would show. I will admit to being a little concerned as the findings would have a big effect on how 2015 went......

Monday 9th February - St.Thomas' Endoscopy Suite - they work on the principle that before you have a colonoscopy you are required to go in and personally pick up the preparation tablets/sachets so that they can run through exactly when you need to take them for a "successful evacuation".

Unfortunately I had a long wait but when the nurse eventually appeared she did apologise. I recognised her from my very first colonoscopy at Guys/St.Thomas' several years ago.

As an old hand at these things I went prepared with the timings already in my calendar. But no, since the last one I had in 2012, they've changed the regime. Instead of taking all the prep on the day before the procedure you now take the final sachet on the morning. I was wondering how that works for the train journey up to the hospital?

The advice leaflet has been rewritten and answers a question I have long wondered about - why do some patients get given 2 litres of Klean-Prep to drink whilst others have 2 x 150ml of Citrafleet? The answer : if the doctors are concerned about your kidneys or you have kidney disease they may choose Klean-Prep or Movi-Prep as these are less likely to affect your kidney function.

..and why do they tell you to avoid drinking red juices or cordials? Something to do with fibre content? No, it's because they don't want any residues of red coloured liquid in the gut that could be confused with blood. Obvious really.

As I was leaving, clutching some senna tablets and two sachets of Citrafleet in my hand, the nurse advised me to arrive early as my consultant always like to start on time and it takes a few minutes to attach the wristband/insert the cannula.

Wednesday 11th February 2014 - Guys Hospital Haematology 2 - Not
much to say, for a change. This turned out to be a routine appointment
and I didn't have a long list of questions. The obligatory blood test
showed all my levels were OK except platelets. No surprise there then.
My consultant reiterated her advice "not to get hung up on numbers" ie.
platelet count. She repeated her description of my bone marrow as being "a 4
cylinder engine running on only 3" and therefore not delivering the
right quantities of platelets. Next appointment - 6 months.

Countdown to Colonoscopy - a brief description of the lead-up to the procedure just in case it might help others who have not experienced the delights before. (Old hands please skip down the page)

Saturday 21st February 2015 - 4 days to go - stopped taking iron tablets. Didn't make a lot of difference.

Sunday 22nd February 2015 - 3 days to go - stopped taking Loperamide. I wondered how long it would take for the effects of the drug to tail off. Could be an interesting train journey into work tomorrow.

Monday 23rd February 2015 - 2 days to go - stopped eating anything with fibre in ie. fruit, vegetables, nuts etc. Drank lots of fluids. Train journeys to and from London were fine.

Tuesday 24th February 2015 - 1 day to go - worked from home. Light breakfast and then nothing after 9am except lots of fluids. Had a phonecall from Endoscopy Appointments saying that 4 patients had all been
booked in for 1:00pm for Wednesday so they were putting me back to
2:00pm. This was a bit annoying as I had carefully worked out who was
going to collect me from the hospital after the procedure. Had to
rethink my plans.

At 4pm - took 4 senna tablets; at 5pm - took first sachet of Citrafleet dissolved in 150ml of water and stood by for its effect.

Prep then kicked in, yu can guess the rest. Coughing to be avoided at all costs.

Wednesday 25th February 2015 - St.Thomas' Endoscopy Suite
- at 7:30am took the second sachet of Citrafleet and drank lots of fluid until 11:00am then nothing. 12:30pm down to Redhill Station, which luckily has toilets on the platforms, and then the train journey to Waterloo and a
ten minute walk to St.Thomas'. All achieved without a problem. I think next time I will take the second sachet a lot earlier. Suprisingly I didn't feel that hungry. I know on previous occasions I have been
absolutely famished and that was the abiding memory of having a colonoscopy. The procedure itself is a piece of cake (not literally of
course).

View from St.Thomas' Endoscopy Suite Waiting Area

Arrived at the Endoscopy Street at 1:45pm and booked in. At around 2:30pm was still sitting in waiting room when the fire alarm started sounding. One of the nurses announced that it was a fault and there was no need to move. The alarm finally stoppped but it was now gone 3:00pm. My consultant appeared, greeted me and said "I hope you bought something to read with you". I knew then it would be a lot longer before it was my turn to be scoped. He made some comment about having to leave the building to which I replied "that would have been the second evacuation of the day for me".

Finally, at 4:00pm, the nurse called my name and it was time to get changed into a surgical gown. I'm pleased I took a dressing gown with me because I can never get the tie-ups to knot properly. A cannula was inserted into my right hand, for a change, and it was off to the pre-procedure waiting area.

The obligarory photo of a cannula

I was the only one in there so at least there wasn't a queue. A doctor
working on a IBD research project appeared and asked if I would be
prepared to take part. She would like a blood sample and some biopsies.
She gave me a leaflet to read about it and said she would be back
shortly with a consent form.When she came back I said that I was happy to help with the research but it was not certain that I would need any biopsies done and that I didn't want to risk upsetting my gut unnecessarily. I agreed that should routine biopsies be required then she could take additional ones otherwise I would prefer not to. I signed the consent form on that understanding.

I found this in a magazine left in the waiting area - rather apt

Shortly afterwards my consultant appeared and explained that he had a young Registrar training with him who was showing a particular apptitude for scoping. Would I mind if the Registrar did the colonoscopy whilst he watched. I didn't mind, it was just another procedure. Of more interest was how much longerI would need to wait? They were just finishing up. He went off to get a consent form and when he came back was happy to answer a few questions. The main one was "can there be a long period between the calprotectin test showing a rise in inflammation and a flare occuring". Yes and that's why they use the calprotectin tests to show if intervention is needed and allow medication to start before the patient is ever aware of any symptoms. It could be described as over treating but it is preventative rather than reactive.

He mentioned he had been interviewed by BBC2's Newnight on the subject of fecal transplants for combating C diff, for which it had a high success rate, and the discussion had also turned to IBD. He did not know when the report would be shown. He described a fecal transplant as being like giving a giant dose of pro-biotics but it's use to help IBD patients was still in the research stage. I also asked if the camera did show inflammation was there an alternative to Azathioprine. Yes, there were lots of alternative drugs now available and they worked in a more targeted manner.

Just before 4:30pm it was time to enter the procedure room, quite a familiar environment as I had had a couple of upper GI endoscopies in there last year. There was a team of six, maroon clad doctors and nurses, three of each. I got onto the trolley and had the oxygen feed attached. I was asked to roll over onto my left side and bring my knees up to my chest into the best position for introducing the camera.

Endoscopy equioment

Did I want sedation? Yes please. The same amount as last time which would leave me sufficiently awake to watch the images in glorious, living colour and ask "what's that?" as the camera traveled ever onwards. Whilst the sedatives were being prepared I saw the opportunity to discuss Bile Acid Malabsorption (BAM), a subject now close to my heart. I explained that after my operation, back in 2011, I had expected my digestive system to return to normal. I had no knowledge of possible BAM and its side effects (chronic diarrhoea). From the posts I have read on various IBD forums and FB pages many others are in a similar position. It really is a subject that needs much wider awareness within the IBD Community. I'll keep plugging away at this one.

Time to put the soap box away. Four syringes of sedative injected into the cannula and we were ready to go. It was time to find out what state my guts were in. The sedative had taken away any sense of foreboding that I might have had. After the initial sensation of the camera being inserted I felt nothing. We were all looking at the images on large monitors as the camera started its journey. From that point I cannot remember the the rest of the procedure or asking any questions. I don't know whether I was conscious but the sedation has dulled my memory or if I lost consciousness so there is nothing to remember anyway. I vaguely recall discussing what we were seeing with my consultant and whether the camera had made it to my anastomosis but it is very hazy. Maybe I'll ask for a little less sedation next time.

I woke up in the Recovery Room where my blood pressure and oxygen levels were monitored. Once they could see my readings were OK I was allowed to get dressed and make my way to the Discharge Lounge where I was given a cup of coffee and some biscuits. At that point my brother-in-law arrived to accompany me home. I just needed to have the cannula removed and to be given a copy of the report. I was disappointed that the report was in black and white but it did show that there was no significant signs of inflammation. I was given a Rutgeert's Score of i0. Very goods news and I was free to go. We left St.Thomas' just gone 5:30pm and walked the 3 km back to Victoria Staion via the backstreets of Westminster.

Walking across College Green opposite the Houses of Parliament

Whilst I was having dinner I re-read the colonoscopy report (copy below) and it struck me that it wasn't very clear.

Click to enlarge

I emailed my consultant asking for clarification :

"Please pass my compliments on to your Registrar as he drove the camera very well and I have felt no after effects. I think the sedation must have taken over at some point because I don't remember asking how what you saw on the scope squares with the rising calprotectin values. Also having now got a copy of the Endoscopy Report I'm puzzled by the first sentence in FINDINGS. Should "with" read "without"? Was there anything unusual at the anastomosis?"

The next morning I received a response :

"Oh dear - that's not the best written report. I will get it amended. ApologiesThe terminal ileum was entirely normal as was the anastomosis.There was some mild inflammation in the colon - not impressive enough to treat to be honest, but this is probably the cause of the mildly raised calprotectin.I'm glad the experience was acceptable and will pass on your comments - thanks for the feedback."

Conclusion

I had half been expecting the scope to find nothing but, as with all health matters, you can never be certain. I'm not going to tempt fate by predicting a quiet year bit, here's hoping.....

Next GI appointment - 6 months time and no need to re-start Crohn's medication.